Thursday, September 13, 2012

Home

We made it home today, and we are so happy to be here! It was wonderful to get to see Jack again, and for Will to be able to rest and relax without fear of needles and tests.

Will is still battling nausea and having trouble keeping food down, but we hope that this will improve soon. He is very weak, and we were sad to see once we got home that for now, Will is not able to walk on his own. His legs just sort of buckle underneath him. It is very apparent that he still has the ability to do so, but it is going to take some time for him to regain enough strength to bear his own weight, especially on his right leg. The doctors said that this is to be expected, but should be temporary and will improve as the swelling in his brain goes down. For now, we are going to take things one day at a time, and just be thankful to be home and to have our entire family of four together once again.

Introduction

Hi, my name is Will, and I am 6 years old. I am loved very much by my parents, Dan and Kelly, my big brother Jack (age 9) and my baby brother Cole (age 2). I was diagnosed with Infantile Spasms in February of 2011. My parents created this website to keep our family and friends updated about my journey with this rare and catastrophic form of pediatric epilepsy.

After numerous treatments failed to stop the seizures (Topamax, B6 Pyridoxine, ACTH, Keppra, Vigabatrin, Depakote, and the Ketogenic Diet) doctors removed the left temporal lobe of my brain in November of 2011, which stopped all visible seizures but my development still remained stagnant. I then underwent a two stage surgery to remove my left parietal and occipital lobes in September 2012. Today, I am a walking, talking miracle and my family celebrates every seizure free day that we have been blessed with.

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